My update & discouraged

[Guest guest]

Haven't posted in awhile, just waiting what my appt this week would lead to.

Have good news and bad news. The good news is that my syrinx has not

increased since April. The bad news: My major complaint besides headaches

is my neck/back pain, which I continue to have. In May the dr said that

surgery was up to me, but there was no guarantee of making my symptoms go

away. I wanted to wait for awhile as I just wasn't ready for surgery again.

I had decompression surgery in 1994 for ACM 30mm. After continuing to have

pain, going into this appointment I was ready to have surgery again. I have

less patience with my children, and it is much easier to get frustrated with

them when I'm not feeling well. It just isn't fair. And as my sister put

it " Your life has been full of blessings which are very hard to enjoy if you

can not enjoy life " . This is so true.

My neurological exam was fine with the exception of my balance when walking

heal to toe, etc., but my normal gait is fine. Although I am very thankful

that things are not worse and that the syrinx has not increased, I just

want to feel healthy and normal again. Now all of the sudden the dr says

that " We don't do surgery for pain " . After asking him if my symptoms are

caused by my ACM/syrinx, he said almost definitely yes. So if we know I

have a problem and it is causing pain, why not try to fix it. I know there

are risks to the surgery, but aren't the risks far less than the chance that

the surgery will be successful in some way. I just keep thinking..... so if

the syrinx never changes and I never have surgery, I will have to live in

pain forever. It was frustrating that the dr tells me that I am the one who

needs to decide when surgery is right for me, but what would I base my

decision on PAIN! I do have numbness in my leg, but this is nothing

compared to the pain.

Anyway, thanks for letting me vent. Not sure if there are any answers. I

will be followed closely to make sure the syrinx doesn't continue to

increase. Hopefully in 3 months I will be no worse off than I am now,

except not being able to enjoy my children to the fullest. I guess I will

be seeing a pain specialist dr rather than my PCP who has me on vicodin. I

only take it when things get really bad and typically only have to take it

once a day. But if this is going to be long term I don't want to have to

suffer anymore than needed. Any suggestions on helping the pain?

Thanks so much for listening.

Angel

ACM/SM diagnosed in 1994

Decompression surgery in 1994